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Capturing the late complications of venous thromboembolism
Anette Arbjerg Højen1, Elin Baddeley2, Stine Foged Lindegaard1
1Danish Center for Health Services Research, Department of Clinical Medicine, Aalborg University and University Hospital, Aalborg, Denmark.
Abstract:
A state-of-the-art lecture titled "Capturing the late complications of venous thromboembolism: the role of patient-reported outcomes" was presented at the International Society on Thrombosis and Haemostasis (ISTH) Congress 2025 in Washington, DC. Venous thromboembolism (VTE) is increasingly recognized as a chronic condition with substantial long-term complications that extend beyond recurrence, bleeding, and survival. Many patients with VTE experience persistent pain, dyspnea, fatigue, anxiety, and reduced quality of life. Frequently used terms for clinical sequalae include postthrombotic syndrome and postpulmonary embolism syndrome, the latter of which includes chronic thromboembolic pulmonary hypertension. Despite the impact of these long-term complications, they are rarely addressed systematically in routine daily practice. Patient-reported outcome measures provide a structured framework for capturing these late complications, complementing clinical outcomes and offering unique insights into the patient perspective. This review outlines why late complications should be systematically captured, describes the patient-reported outcome measures commonly used to assess them, and discusses key opportunities and challenges for their integration into clinical practice. Finally, we summarize relevant new data on this topic presented during the 2025 ISTH Congress.
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